Harm, hype and evidence: ELSI research and policy guidance
Harm, hype and evidence: ELSI research and policy guidance
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DOI：
10.1186/gm425
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发表时间：
2013-03-26
期刊：
影响因子：
12.3
通讯作者：
Cook-Deegan, Robert
中科院分区：
文献类型：
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作者：
Caulfield, Timothy;Chandrasekharan, Subhashini;Cook-Deegan, Robert
对与遗传和基因组研究有关的伦理、法律的和社会问题的研究进行了大量投资。这项研究应有助于制定相关政策。迄今为止，许多相关政策-例如专利、基因检测和基因歧视等领域的政策-似乎更多地是基于对危害的猜测和轶事，而不是基于现有证据。虽然不能总是允许对证据的追求推迟政策选择，但对我们来说，通过纳入证据来改进政策选择似乎是不言自明的。
There has been much investment in research on the ethical, legal and social issues (ELSI) associated with genetic and genomic research. This research should inform the development of the relevant policy. So far, much of the relevant policy - such as in the areas of patents, genetic testing and genetic discrimination - seems to be informed more by speculation of harm and anecdote than by available evidence. Although a quest for evidence cannot always be allowed to delay policy choice, it seems axiomatic to us that policy options are improved by the incorporation of evidence.